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Thursday, 15 September 2011

Dismal bone cancer statistics

Yesterday's email inbox included details of a new paper published in the International Journal of Cancer by Dr Jeremy Whelan (possibly the UK's foremost expert on osteosarcoma and other bone cancers) and colleagues. The abstract of the paper is included below:

AbstractPrimary malignant bone sarcomas (MBS) are rare and there are few studies examining their incidence and outcome. Here, the incidence and survival of all subtypes of MBS registered in England between 1979 and 2007 were analysed from patient registry data held by the National Cancer Intelligence Network (NCIN). Over 11,002 new cases of MBS were registered, an average of 379 per year. There was no change in incidence demonstrated over the study period (p=0.08). Although a peak incidence is observed in adolescence, approximately half of MBS are diagnosed in patients over 50 years. An improvement in outcome of MBS was observed between those patients registered from 1979-1983 and 1983-1987 (p<0.0001), but there has been no improvement since. In the most recent period studied (patients diagnosed 1998-2002) 5-yr survival was 55% in Ewing sarcoma, 70% in chondrosarcoma, 56% in chordoma and 43% in osteosarcoma. Patients diagnosed with osteosarcoma over the age of 40 years or with a non-extremity tumour have a significantly inferior outcome; 22% 5-yr survival >40 years compared to 53% <40 years (p<0.0001) and 16% non-extremity tumour compared to 48% extremity tumour (p<0.0001). This population-based study has allowed us to confidently define the English incidence and survival rates of both the commoner bone tumours such as osteosarcoma, and rarer entities such as chordoma as well as groups with inferior outcome. The lack of significant improvement over recent decades for these diseases is cause for concern and further research.

These appalling figures ought to be a national scandal. Not only do these figures show little change over the years, they also are worse than figures from other countries. Why is it that in the UK the overall five year survival in osteosarcoma is a mere 43%, compared to say 68% in the US (according to the paper The epidemiology of osteosarcoma by Ottaviani G and Jaffe N, Cancer Treat Res. 2009;152:3-13.), or the European figures of '59% and 51% among children and adolescents with osteosarcoma' (these figures from 'Bone tumours in European children and adolescents, 1978-1997', by Bielack et al, European Journal of Cancer). Note that the European figures, which represent an older period, also include the UK, which means that the figures in other European countries would be even better, and that they may have improved more since then.

These dismal figures include a 5 year survival of '16% for non-extremity tumour' - in plain English these are osteosarcoma tumours not in the arms and legs, including tumours in the pelvis and the jaw (which is what killed my son, George).

It isn't as if this is news, it's long been known that the UK lags behind other countries in the treatment of osteosarcoma. For example here's a report from the BBC back in 2009: No change in bone cancer deaths. Is it that not enough of our children are dying to make this a priority?

Of course I'm angry, and so should we all. As a matter of priority we need to discover what it is that they do in Europe and the US so that UK outcomes can be improved. It should be happening now.

Secondly with such poor results, particularly in those sub-groups which have even worse outcomes (such as non-extremity osteosarcoma), oncologists need to be more open-minded about treatment options. To proceed as if this type of disease is the same as osteosarcoma in the arms or legs is especially unforgivable.

And we know from our own experiences just how closed minded some oncologists can be. For example we asked about zoledronic acid and Mifamurtide/MTTPE for George when his treatment started to fail but were turned down. Two years later, when George was dying, we were finally given one course of zoledronic acid - but purely as a palliative treatment to stop cancer pain. We were also informed that there was a possibility that zoledronic acid would be added to the next round of the EURAMOS trial - but there were already phase III trials on-going in Europe when we asked about it. And when I asked for oral ibandronate because George was too ill to go to hospital for more zoledronic acid it was turned down again.

I know that the chances are that these would not have saved him, but we will never know now.

However, it was the attitude that I am highlighting. Similarly when we asked about treatment in Europe or the US we were told there was nothing they did which they do not do in the UK. When we finally did go abroad the disease was so far advanced that there was nothing anybody could do. But all along the line we there was no inclination to look beyond the standard protocols until things had gone so far that there was no other outcome possible.

Ours is not the only case, and our hearts go out to those other patients and families going through what we have already suffered. It stinks, but it's been like this for far too long and nothing seems to change.